Search

My daughter Maura is able-bodied. Her legs work fine. Her muscles are pretty strong. Her organs are doing awesome. Even her epilepsy has cleared up, gone into remission or whatever epilepsy does when it stops occurring. Sure, there’s some low muscle tone and some far-sightedness, and she’s not amazingly coordinated. But all in all, Maura is quite healthy.

But she is also disabled.

But she would be considered able-bodied.

But she’s actual disabled.

But she’s healthy.

She is a conundrum. She doesn’t appear disabled. She has what’s known as “invisible disabilities” – hers can’t be seen at first glance. And that’s what’s getting me worried, what with health care back on the auction block.

Kellyanne Conway said (and I reluctantly share) –

don’t bother clicking the play button, it’s just a screen shot

Does this mean she expects someone like Maura to see what her options are?

“Don’t be silly Phoebe, she doesn’t mean her, obviously.”

But obviously, Maura is able-bodied. And Maura’s been considered “not disabled enough” in the past, by the state of Michigan when we applied for a children with special needs Medicaid program.

You can be able-bodied and unable to work. Maura a prime example. But there’s also those who are working so hard to just stay alive mentally that they can’t actually hold a job. Should they seek “other options” because they have PTSD or depression? Should they be denied Medicaid because they are working to figure out how to live with schizophrenia right now? I mean, they might be as able-bodied as Maura. Are they just all slackers undeserving of health care?

Meanwhile, V.P. Pence said this –

First – why the rush? Why does it have to be by the end of summer? Why can’t we take our time and do it right?

Second – what’s this “personal responsibility” you speak of? Can you define it more?

Because, Mr. Pence, your platform is a pro-life one. And one would think that being pro-life means you’re willing to help all lives, not just congressional ones or political ones. But when you say “personal responsibility”, it seems that you are putting families who do choose life – whether it’s the couple whose unborn child has been diagnosed in utero with Down Syndrome or the woman taking care of her elderly parent – off to float alone.

That isn’t the American way. It may have become the Republican way, to smack a person on the ass as you shoo them out the door while yelling “Good luck! By the way, there’s holes full of bears and snakes!”, but as Americans, we pride ourselves on coming together and helping each other. That’s why there are so many people sharing Go Fund Me campaigns to pay for someone’s child’s new wheel chair (that isn’t covered by insurance) or wife’s cancer treatments (that have left them bankrupt).

You say “personal responsibility” like we all haven’t been personally responsible for our health care bills. Newflash – we already are. Too much so. But the way you say it has people worried. Do you expect my disabled daughter to be personally responsible for her health care bills when she can’t be left responsible for brushing her teeth daily without supervision?

“Of course not Phoebe.” you may say. But what you’re also saying is that we as her parents, who are being pro-life, are personally responsible. And not to expect help. Ever. Because that’s the Republican way.

So here I am, with my able-bodied daughter, wondering what the future holds. What the future is going to expect from her. And I don’t know.

What I do know is that something like health care shouldn’t be rushed. Something like health care should have lots of input from people whose lives it affects. Some things, like the phrases “able-bodied” and “personal responsibility” shouldn’t be thrown about carelessly. Health care shouldn’t be broken down into sound bytes and tweets.

And I definitely shouldn’t be told I’m overreacting or that it can’t possibly happen when there are congressmen who are willing to vote on a health care bill they haven’t read.

I have enough to worry about and plan for Maura’s future. I don’t need to worry about what kind of job will give her health benefits because she’s deemed “able-bodied” and able to work.

If you live in these states, please call the listed senators. If you don’t live in these states, pass on this list to people you know in those states. A call sc…ript is below the list. Copy and paste for widest circulation. Call EVEN IF they said they are voting against the bill. GOP Leaders are looking to offer $$ for votes right now.

I’m calling to urge Senator [NAME] to vote against the Better Care Reconciliation Act. As the CBO analysis of the bill makes clear, this legislation will cause millions of people to lose their insurance and will raise premiums for millions of others, yet does nothing to resolve the Affordable Care Act’s shortcomings. I hope the Senator will do the right thing and reject this bill, even if there are modest changes. Reforming the ACA should be done in an open, deliberate way with public hearings and input – not rushed through the Senate with only days to consider the ramifications.”

5 Responses to “Can we discuss being able-bodied?”

Preach on … the only times I’m grateful my son has both an intellectual AND physical disability is when the physical disabilities that can be pointed to (many actually) make his needs undeniable. In fact, I have to remind them the powers that be regularly (and gratefully have testing paperwork to support us) that our son has the problem-solving abilities of a 7-year-old despite the fact people can have a charming conversation with him at the 10- to 12-year-old level. Non-able-brained? Dear God, what would THAT be? And why do we need so many labels?

As a disability specialist Thank you as a mom of an adult daughter w a pre existing condition or two who is also for all appearance sakes… able bodied! Thank you … if this goes through her preumiymsxand medical supplies will cost so much she may have to choose that or food!

Keep fighting and keep urging others to fight. My oldest daughter also appears “able-bodied”, her disability is mental. At least it was. Now she has a brain tumor. Because of her mental problems, she won’t follow doctors instructions. Because of the way health care is and has been, she hasn’t been hospitalized for her mental problems. They keep telling me all she needs is out-patient care and SHE has to ask for it.Her neurosurgeon has said she has, at most, 1 year, but he believes she won’t survive 6 months because of the speed of growth. She just turned 34. Unless there is a miracle, she will not be here to turn 35. FIGHT for your daughter! I have fought for mine for 30 years, unfortunately, I have to fight her, as well as doctors and insurance companies I’ve pretty much lost my fight, but I have family in states you listed, and I will call on behalf of them and your daughter. God Bless.

You know, I found your blog because I am searching for examples of writing in any form by people like me who are struggling with mental illness – whether it’s first hand or a close family member. I am chronically unemployed (and uninsured) because of CPTSD, attachment disorder, and who knows what else. My life literally depends on figuring out what is wrong and fixing it, and I have been trying all my life, and I don’t feel any closer than I was 20 years ago.

I *think* that one of the manifestations of my illness is an utter inability to express myself – it’s obviously not an inability to spell or put words into sentences, but there is an overwhelming confusion of thoughts and ideas, and a fear of being heard (or not), and it stops me in my tracks. (There is more to it than that, too much to go into here.) In every job I have ever had, I have failed to make a single lasting connection / friendship with anybody. I have done good work, but my own sense of self-loathing stops me from reaching out for referrals. I get bullied a lot and cannot defend myself. People smell weakness like sharks smell blood.

I find it so insane that people in this country are constantly killing each other – we hear it on the news every day – and we always hear the agonized wailing question, “Why??? Why???” But the answer, or a very realistic place to start looking is standing there, like a 900 pound gorilla in the room, whose name is Mental Illness, and NOBODY wants to look at it. We collectively refuse to talk about it, still, after all the awards for enlightenment are handed out, we just shrug and go back to blaming the victims.

I hope I don’t upset anybody by saying this. Mental illness is an extremely vague term that covers everything that can’t be seen, anyway that’s how I’m using the term. So I’m not trying to imply that all people who suffer are violent – I would have to include myself if that were the case, and I’m not! I’m just saying that if the system stopped ignoring it, we would benefit as a society in many, many ways, one of which *might* be a reduction in violent crime. If the politicians never give a crap about us being sad, (that was sarcasm, see what I did there?) then we have to give them something to focus on that they do care about, like murder.